Dear friends,

Reggie and his brother, Byron.
As some of you may know, I am a man of meager means. Part of this is because of my NF, but part of it is also due to the way I’ve chosen to lead my life.

I live simply. I don’t need much and I am not a complainer. I have a firm faith in God, Country and my fellow man. I don’t need a big house, a nice car or perfect health because I have spent a lifetime figuring out what is truly important: living comfortably within my means and enjoying the companionship of others.

But no matter how frugal I may be, sometimes even the simplest needs of the Just Ask! Foundation are beyond my ability to provide.

When people find this out, they often say “If I only knew you needed something, I might have been able to donate it to your cause!”

Like when I needed new shelves for my t-shirts, and my friend Lou Congelio helped me out by donating some really nice shelves he wasn’t using anymore. Sometimes it just works out that a particular company or individual happens to have exactly what I need.

Reggie and his mom.

So, if you happen to be one of those people or companies that is in a position where you are able to make a positive difference in someone else’s circumstances—or mine— I am asking you to please do so.

As you may know, a big part of Just Ask! Happens via the Internet. It has truly opened the world to me. And now we have an online store!

I’ve always felt that life simply “comes at you” whether you are ready or not… and it’s how we react to life’s challenges that I believe is a person’s measure. For all of you reading this that have helped others through volunteering or charitable donations, allow me to say “Thank You” on behalf of everyone that ever needed the help of their fellow human beings.

Clinical genetic testing can confirm the presence of a mutation in the NF1 gene. Prenatal testing for the NF1 mutation is also possible using amniocentesis or chorionic villus sampling procedures. Genetic testing for the NF2 mutation is sometimes available, but is accurate only in about 65 percent of those individuals tested. Prenatal or genetic testing for schwannomotosis currently does not exist.

There is no currently accepted medical treatment or drug for schwannomatosis, but surgical management is often effective. Pain usually subsides when tumors are removed completely, although it may recur should new tumors form. When surgery isn’t possible, ongoing monitoring and management of pain in a multidisciplinary pain clinic is advisable.

Anyone with schwannomatosis experiences some degree of pain, but the intensity varies. A small number of people have such mild pain that they are never diagnosed with the disorder. Most people have significant pain, which can be managed with medications or surgery. In some extreme cases, pain will be so severe and disabling it will keep people from working or leaving the house.

About one-third of individuals with schwannomatosis have tumors limited to a single part of the body, such as an arm, leg, or a segment of the spine. Some people develop many schwannomas, while others develop only a few.

The distinguishing feature of schwannomatosis is the development of multiple schwannomas everywhere in the body except on the vestibular nerve. The dominant symptom is pain, which develops as a schwannoma enlarges, compresses nerves, or presses on adjacent tissue. Some people experience additional neurological symptoms, such as numbness, tingling, or weakness in the fingers and toes. Individuals with schwannomatosis do not have neurofibromas.